Monday, July 25, 2016

It is so important to be prepared for doctor visits. This can’t be stressed enough. Dystonia is a complex disorder and our symptoms are very specific to us, making it imperative that doctors know as much unique information about us as possible. Be sure to provide them with your medical history, all of your symptoms (even those that seem minor), medications and nutritional supplements you are taking, and the things that exacerbate and calm your symptoms. Also be specific about how your symptoms fluctuate throughout the entire day.

If it is your first visit, add as much additional information as possible to supplement the paperwork they ask you to fill out. If you know you have dystonia prior to your visit, get as educated as possible about it. Be familiar with the different kinds of dystonia and the various treatment protocols.

We need to keep our doctors on their toes and sometimes educate them. It does not matter how many patients they have seen. They have never seen you. You are different than every other person who walks through their door even if you share the same diagnosis; and as we all know, there is not cookie cutter treatment approach for dystonia.

When your doctor suggests something, go home and learn more about it to decide if it is right for you. The wrong treatment at the wrong time can do harm. Do your homework. We have to be our own best health advocates with our doctor working as a partner in our treatments. Ask questions, no matter how many you have.

Many find it helpful to keep an ongoing journal of their symptoms so they can share it with their doctor. Keeping a journal or a checklist of symptoms is especially helpful if you are getting botulinum toxin or taking medications. It helps doctors modify your treatments as needed.

I suggest keeping a symptom journal that highlights the problems you are having AND a wellness journal so you don’t lose focus on the positive things in your life. Your wellness journal should include your physical health as well as your mental, social, and spiritual health.Remember that when you see your doctor, this is your time and your money. They work for us. Spend as much time as you need to have all your questions answered and health concerns addressed. Sadly, many doctors won't give us much time. In this case, a little persistence from us may help. If not, I suggest finding a new doctor. If that is not possible, be as prepared as possible with all of your questions for that limited time you have with your doctor.If after a visit you have a question, please call the office. I am not saying be a pushy pain, but sometimes we need to find out more to set our mind and body at ease. Plenty of doctors appreciate patients who are diligent about their health because they know it is conducive to better treatment outcomes.

Medical FolderI have been to so many doctors that I feel like a broken record telling my story over and over. Plus, my symptoms have changed over the years. To make visits easier, I created a personal medical folder to bring to the doctor so I can share as much pertinent information about myself as possible so they have a clear picture into my life.

My medical folder includes pictures of me showing how my dystonia has changed over the years, all medical treatments I currently receive or have received, medications I am taking and have taken in the past (prescription and over the counter), nutritional supplements I take, allergies, and results from various tests (blood work, MRI, CT, x-rays). I also include a checklist of my symptoms and any changes I have had, as well as all other relevant information a doctor might need to better treat me.

It is important to go a step further by letting a family member and/or friend have access to your medical folder in case of an emergency. If you become incapacitated and someone needs to speak on your behalf, they can simply grab the folder and present it to the attending nurse or doctor. It is also helpful to get a medical ID card for your wallet or purse (and/or bracelet) to put your illness, medications, allergies, emergency contacts, and other pertinent information.

Taking a little time to get your medical information organized can pay dividends. It can make doctor visits far less laborious and it can help you in case of an emergency where this information could prove vital to doctors in order to treat you most effectively.

Sunday, July 17, 2016

Welcome to Dystonia Living! I relocated my blog from my
website since the blog my website company offers is not as user friendly as I
would like. I am not the most tech savvy person, but I do love to learn so
please bear with me as I get my feet wet with this new format.

Speaking of learning, that is what this blog is all about. I
will be sharing information about dystonia and related challenges to hopefully help
make your life a little easier. As you well know, quality of life is altered
when dystonia intervenes, but it does not mean that life stops. We must go on;
perhaps in a different way, but we must go on.

Adaptation and acceptance are probably two of the most challenging
things we have to learn. After 15 years with dystonia, I am still a work in
progress. My symptoms are better managed now compared to years past, but every
day has its challenges. Some much more than others where I want to rip my hair
out from the pain and muscles spasms and fatigue and…no need to go on. You know
full well what it is like!

Please take a look around at the different posts. Feel free
to comment and share with others. If you would like to learn more about me,
there is a brief bio in the sidebar. Additional information is on my main website: www.diagnosisdystonia.com. You
will find videos, support group resources, links to articles, and information
about my book, Diagnosis Dystonia: Navigating the Journey. Please check out the
reviews to see if it would be of help to you. The Michael J Fox Foundation has
it listed as one of their suggested resources, which is really cool since there
are no other dystonia books on their recommended list!

I wish you all the very best and thanks again for stopping
by. If you like what you see, please subscribe to get updates sent to your
email each time a new entry is posted.

Saturday, July 16, 2016

Unless you live with dystonia, it is very hard to understand how it physically feels, let alone the mental and emotional challenges that come with it. For some people, dystonia permeates every single part of their lives, demanding so much of their attention that it can be the only thing they think about. Their symptoms never stop long enough for them to get a break. The pain for many is excruciating.

This chronic lifestyle is very hard to comprehend for a lot of people. It certainly was for me until I developed dystonia over 15 years ago. Prior to dystonia, life was easy. I never had to carefully consider everything I did for fear it would throw my body into more pain and trauma than it already was. I lived freely in a body that worked great, doing whatever I wanted, whenever I wanted; something I took for granted, which I now see so many able-bodied people doing all the time.

When dystonia hit, my perspective on this changed in an instant as I longed for that life I once had and never fully appreciated. Dystonia has challenged me unlike anything ever before. You can see in my photos how dystonia can affect my body. It turned my world upside down and has taken me many years to find my bearings.

There are so many people in our lives who don’t understand the devastation dystonia brings, so I hope this video and article provide a new perspective. Perhaps by learning what dystonia feels like, people can be more empathetic and we can enjoy happier, healthier relationships. While this video does not describe all the many different ways dystonia feels, I hope it is a good representation of what the vast majority experiences.

I find that the best way to describe dystonia is to share an example of something similar to what other people have experienced. At my worst, I used to say it felt like someone constantly had a power drill in my skull, neck, shoulders, and back, and a rope tied around my head yanking it towards my right shoulder. Of course I don't know anyone who has experienced this, so it is not relatable and thus, probably not the best explanation. I would get empathy, but it was accompanied by blank stares.

Similarly, I often hear people say it feels like the affected body part(s) is in a vice, they are being squeezed by a snake, their head feels like it is being pulled off or is the weight of a bowling ball, and/or their muscles pull, turn, and twist uncontrollably. While most of us with dystonia understand what all of this is like because we experience it, it makes little sense to someone without dystonia. In order for them to better understand, we must use specific, tangible things they have also experienced so they can relate. Or, be creative and have them do things that mimic what you feel. Please see the video for some ideas.

As you can see from this video, dystonia is not a fun disorder to live with by any stretch of the imagination. Take one of the examples I give about a charley horse. Imagine what your life would be like if you had a charley horse that never went away. It is almost unfathomable, but this is what dystonia feels like for so many of us. Is it any wonder some of us may not be the same person we were before dystonia entered our lives? Chronic pain can change everything, which has forced us to adopt coping mechanisms that don’t necessarily reflect our real level of discomfort.

When we say we are in pain, it is often worse than usual; much of the time we are just coping and trying to sound happy and look normal. The gal in the picture below is evidence of this. She was in major pain in this picture, but her smile tells a different story. Also take note of how she is holding her head; a gesture that is very familiar to those of us with cervical dystonia.

Sometimes we hear others say, “You just need to push yourself more.” It may be hard to read how we feel on our face or in our body language, but we push ourselves all the time; sometimes too much and we pay for it later with worse symptoms. Finding balance is one of our greatest challenges. Some days we do nothing but push just to get through the day. Sometimes it took everything I had in me to merely get out of bed to make breakfast.

This is the reality of dystonia for many people, which can be a difficult concept to grasp. It is even difficult for those of us living with dystonia to sometimes understand. This video and article should provide more clarity. Too many people with dystonia do not get the support they need because those close to them simply do not understand the gravity of the situation, including our doctors. I hope this helps in that regard.

In the summer of 2001, I developed a neurological movement disorder called Cervical Dystonia (CD). In the very beginning, I saw chiropractors, medical doctors, massage therapists, physical therapists, psychologists, and orthopedists, none of whom helped or even knew what was wrong. Within 8 months and with no diagnosis, I was disabled to the point of barely being able to function.

Utterly frustrated, I stopped all care and began researching the internet like crazy where I discovered cervical dystonia. I then sought out a movement disorder neurologist who made the official diagnosis. Whew! What a relief…sort of. Now what? What do I do with my life now? I had a diagnosis but I was in too much pain to continue pursuing my masters degree and I certainly couldn’t work. Social events were also out of the question. It was just me and the TV all day long. Even worse, no treatments at the time were helping.So I did the only things I knew how to at the time. I grieved. I cried. I yelled. I retreated from the world. I drank alcohol to medicate the mental and physical pain. I ate a horrible diet and gained 150 pounds. I wanted and waited to die. Melodramatic? Perhaps, but that literally was my reality for 5 years.Something miraculous then happened in December 2006. I got sick! Yes, believe it or not, getting a major stomach flu saved my life. My dystonic body was forced to relax in bed and do nothing. Interestingly, my symptoms receded a bit which helped me think more clearly. Did I want to live or did I want to die? Was there a purpose to all of this? A resounding yes to both was screaming in my head. I realized that I had lived what I now view as the greatest gift ever. For 5 years, I had my life as I knew it taken from me so I could build a better one!When the stomach bug flew away after 2 weeks, I changed my lifestyle back to what it was before dystonia set in. I ate well, I exercised, I practiced stress management, I saw good doctors, and I forgave myself for the guilt I put myself through for developing a life altering health condition. Within a year, my dystonia symptoms improved significantly and I lost the 150 pounds I gained. Life was fun again! Even though I still had challenges, and still do to this day that I have to carefully manage, I found my purpose...to help others.

I enrolled in a school to become certified as a health and wellness life coach. It took me two years to complete the program and when I did, I had a sense of accomplishment unlike anything in years. I knew exactly who I wanted to work with; that of course being others like me who were living with chronic health conditions.But it didn’t stop there. I had to do more. Two years later, I published a book! Me…the guy that once rolled around on the floor in writhing pain all day long wanting to die. A miracle? I don’t think so. Just an awakening to a life that went off course for a little while.

You see, I had to get lost before I could find myself. I had to lose all purpose in life to find my purpose, which I now know is to teach and help others. I believe that is the purpose for all of us and we all do it in our own special ways. I just needed the gift of dystonia to show me my way.As Charles Lindbergh said, “Success is not measured by what a man accomplishes, but by the opposition he has encountered and the courage with which he has maintained the struggle against overwhelming odds.” For me, dystonia was my opposition. Now it is my partner in helping others improve their quality of life and find meaning and purpose.

“You have dystonia” are three words that can be very confusing and frightening. Receiving the news that you have any chronic condition can bring out a lot of emotions. People may react with fear, anxiety, anger, disbelief, a sense of loss and injustice, and depression. Some cry, scream, go numb, become very inquisitive, or feel vindicated that what they have wrong has been acknowledged. I would guess that most people experience a combination of all these things and more.I can appreciate these reactions because I experienced them all at one time or another. However, it was not when the doctor said, “You have cervical dystonia.” It was in the weeks, months, and years that followed that I rode the emotional roller coaster. I was actually pretty relieved at first because I had already self diagnosed so it was good to get a doctors’ confirmation so I could move in positive directions regarding treatments and lifestyle changes.If the dystonia diagnosis isn’t enough, even more deflating to hear is, “there is no cure.” This can cause anger, fear, and depression, to name but a few reactions. However, it is important to put this into perspective. How many diseases/disorders that people live with today, and live very well with, have a cure? I don’t have the answer to this, but it is pretty low. Most diseases are managed, not cured, and dystonia is one of them.Just like people with diabetes, multiple sclerosis, Parkinson’s disease, celiac disease, AIDS, etc., all of which have no cure, people with dystonia can live a fulfilling life with proper treatments and lifestyle changes. Please don’t allow yourself to believe that you won’t have a happy, functional life simply because dystonia has no cure. Many people have transformed their lives by finding successful ways to manage their symptoms.

Accepting the challengeThe dystonia diagnosis is not the definition of your life. It is not the book of your life. It is just one chapter of your life among many other chapters. While it can alter the course of your life from subtle to dramatic ways, it need not be how you define yourself. It is not what happens to us in life that defines us. It is what we do with it that defines us.Work hard every day to think about your life right now and not the life you once had. This is the way everyone should live, dystonia or not. The past is over. Also, don’t predict where you might be in six months or a year. As with all of life, dystonia is unpredictable so it is best to roll with the punches versus anticipating “what might happen.” Being consumed with worry can prevent you from helping yourself right now. Take each day one at a time.When I struggle in this area I say the following affirmation: “I relax into the flow of life and life flows through me with ease.” I read this in a book by Louise Hay called, You Can Heal Your Life (1984), which I highly recommend.Saying how much we hate dystonia won’t make it go away. When we say we hate something, anger, bitterness, and resentment consume us. Instead, find a way to cohabitate with your dystonia because no amount of anger will take it away. Fighting any adverse condition will only increase its power over us.We have a choice to feel how we want about everything. Mindfulness (non-judgmental acceptance of thoughts and feelings) tells us that there is peace in accepting things the way they are in this moment. This acceptance gives us the space to just be, and with that space, the opportunity to let go.Focus on things just as they are; not the way you think they should be. The changes that can come out of this acceptance are incredible. As Michael J. Fox said, “Acceptance doesn't mean resignation. It means understanding that something is what it is and there's got to be a way through it."If you have a racing mind full of questions and concerns, please reach out to the many online forums, support groups in your area, and dystonia organizations to talk to others who can relate. Dystonia can be distressing and exhausting. Share what you are thinking and feeling. Learn about treatment options and coping mechanisms. You need not feel any shame. You have done nothing wrong to be in this situation. Take control and do what is best for you in order to get better.

Living well with dystonia and other chronic conditions requires that we be disciplined in taking good care of ourselves. Some people rely solely on their doctors for care. Unfortunately, except for suggestions, doctors can’t do much for us beyond providing treatments. For some this is enough, but for the vast majority, we need to do more for ourselves to be as healthy as possible.Doctors don’t feed us, exercise for us, sleep for us, choose our spiritual practice, select the people we spend time with, etc. We are responsible for practically every aspect of our well being which is done by making healthy lifestyle choices; in other words, practicing “self care.” Self care for me includes eating well, exercise, quality sleep, stress management, massage therapy, acupuncture, listening to music, resting by the pool or at the beach, meditation, prayer, avoiding toxic people, refraining from activities and events that overtax my body, taking breaks from my computer and phone, walking in the park, reading inspirational books, watching my favorite movies and TV shows, and spending time with people who lift me up.

I like to be active, but at times I also need to rest. For years I felt guilty if I took a break and rested during the day because I felt like I was wasting time and being lazy. Even though my dystonia symptoms required that I rest, I still felt guilt because it is not my nature to be idle. I was not comfortable doing what I perceived as “nothing.” It was not until I changed how I looked at it and realized that doing “nothing” was a form of self treatment and care that is vital to my health. I also realized that I didn’t do enough “nothing” for the vast majority of my life, which kept my mind and body in constant overdrive, creating a chronically stressed and unhealthy state.When my dystonic body requires exercise, I feed it exercise. When my dystonic body needs rest, I rest. No qualms about it anymore. I make sure to relax in a peaceful setting to calm my body and mind. This might be at a pool, beach, my yard, a park, or somewhere in my home. I call it “purposeful resting” because it serves an important need. In many ways, this is more helpful than some treatments I receive.

When I realized the benefit of my self care activities and by renaming them to things such as “purposeful resting” and “self treatment”, the guilt went away. I am now more comfortable doing these things because I value how much they improve my life.With the guilt gone, my self treatments are more effective in helping me manage my symptoms and interestingly, they make the treatments I receive from my health care team more effective. It just required me to shift my thinking so I was able to accept that doing “nothing” from time to time was actually a form of loving, personal care that enhanced my overall well being.If you are struggling with taking time to care for yourself, whatever that means to you (taking a nap, getting a massage, going to the gym, reading a book, meditating), change how you look at it and/or what you call it. We rarely to never feel guilty when we are sick and have to see a doctor for care, so why should it be any different when we care for ourselves?To learn more about self care and coping with the many things that accompany life with dystonia and any other challenge, be sure to get a copy of my book, Diagnosis Dystonia: Navigating the Journey. Print and Kindle versions are available. To see what others are saying about it, please read the many positive reviews.

Have you ever played the social media comparison game? If you have, you are not alone. Most people at one time or another have gotten caught up in what I call a “comparathon”, where they measure the success of their lives against others based on what they see in posts on various social media. Often times, people feel they don’t measure up to the seemingly full and happy lives of others, which can cause changes in mood. Numerous studies have shown the negative effects of social media (as well as the positive, so there are pros and cons), especially with people who already live with anxiety and depression. Add in a physically limiting health condition (such as dystonia, which I live with) and it can be exponentially worse for some.

For many, due to the inability to be as comfortably mobile as they once were, much of their interaction with the world is through social media; the place where there are pictures and videos of their friends living as if they don’t have a worry in the world. You may even see people with health challenges similar to yours who are living what appears to be a pretty normal life and involved in more activities than you. This can further aggravate depression because you feel like you are missing out on everything, but there is good news…

…what we all know but often forget is that the lives that many people display on Facebook, Twitter, Instagram, etc., don’t tell the whole story. It is a microscopic view of their lives. For some people it IS as exciting and fun as they illustrate. For many others, it isn’t as fun and easy going as we interpret. Everyone has challenges, some of whom hide them very well and only show the fun things in their lives. This gives others a skewed perception of reality.

Don’t get me wrong, there are lots of very happy people living their lives, having a ball, and portraying it on social media exactly as it is, but there are also many who give this appearance when it doesn’t exist. For many, social media is an escape from their own painful reality.

Behind many of the “happy” images, we don’t see or hear about financial problems, marriages breaking up, kids struggling in school or into drugs and alcohol, health issues, depression, stress, anxiety, worry, fear…the list is endless. Many people who seem to have the perfect life often live with the same things that haunt the rest of us. We are not alone in any of our worries or concerns by a long shot. If you are human, you have issues…simple as that. Do your best to get rid of any envy you may have. You are just as worthy as anyone else.

Further, if you spend a lot of time on support group sites where people talk about all the problems they are having, this can cause you to worry more about how your health issue might progress. We may also take on the burden of others due to our empathetic nature. This being the case, balance your time on social media and the outside world.

As a health and wellness coach, I work with people who have chronic health conditions, anxiety, depression, weight issues, etc., and many of them become more unhappy and unhealthy because of what they see on social media. Even the people I work with who don’t have “problems” become more depressed by some of what they see. So, it is not just people who have limiting health conditions that are negatively impacted. Social media induced depression can affect anyone. It is especially challenging in the winter months when people are stuck indoors and for those who have Seasonal Affective Disorder (SAD) which causes a shift in moods.

With all of this in mind, the next time you are looking at pictures and videos of others on social media and feeling depressed about your life because it isn’t you in those images, remember that this is just a small window into their lives. For most, there are challenges behind all the “happy” smiles so please do not view everything you see on social media as the whole story. In fact, you may be happier than the people you perceive as “living the life.”

HOWEVER, to contradict everything I just said since my focus is primarily on the negative impact of social media, I suggest practicing “letting go”, if you will. Be happy for others and all the things they are doing in their lives and sharing with us; acknowledge them for the fun moments they enjoy. This is a much healthier way to process what you see. Sharing in each other’s happiness and joy will help us all feel better. Even if what is displayed isn’t the whole story, big deal; share in the happy moments because we all have them. Just keep things in perspective so you don’t get too down when you decide to compare your life with someone else.

As we all know, stress and dystonia do not mix. It can have a negative impact on our symptoms, such as increased spasms, twisting, pulling, pain, anxiety, headaches, physical weakness, increased tension, sleep interference, and many other problems.

A dystonic body is under significant stress during normal circumstances, making our response to additional stress potentially catastrophic. Stress can affect us to such an extent that our nervous system is always aroused, keeping us trapped in fight or flight mode because our body is conditioned, particularly if we are in pain, to always be on guard.If stress is prolonged, adrenaline and cortisol maintain tension in the body. Over time, muscle tension can become habitual which pulls the body further away from relaxation. You may reach a point where you are no longer aware how constricted your muscles have become, and relaxing them can be very difficult. In fact, if you try to relax, your muscles may tighten even more because they have forgotten what letting go and relaxing feels like. This is why mind/body relaxation exercises are vital.When I was researching the topic of stress for my book, Diagnosis Dystonia: Navigating the Journey, I came across something very intriguing. Stress experts have now added the word “freeze” to the fight or flight response with respect to the fact that instead of fighting or fleeing, we might sometimes freeze (like a deer in headlights) in painful or traumatic situations. This is very intriguing to me as it relates to dystonia.The fight or flight stress response becomes activated when we believe there is a chance we can outfight or outrun our attackers (or any perceived danger and stressful situation). The freeze response differs in that it gets activated due to a perceived or real inability to take action (like a mouse trapped in a corner by a cat). In essence, one feels helpless to fight or flee the threatening, painful, or stressful experience so it freezes. Doesn’t this helpless feeling sound similar to living with dystonia?During the freeze response, the body becomes both tense and paralyzed at the same time. The thoughts, sensations, and emotions of the stressful experience become suppressed or internalized, not only in the mind but in the tissues of the body. This is called somatic memory (body memory) and can have damaging effects if the event or trauma experienced is not processed in a healthy way.

Think about the common symptoms of dystonia which include contractions, stiffness, and rigidity. Out of fear of worsening our symptoms, many of us live in “protection mode” where we consciously restrict our movements (to the best of our ability) to try and decrease pain and/or involuntary movements.Purposely restricting our movements, avoiding activities that may increase our symptoms, and holding ourselves in postures to prevent further pain and involuntary movements is similar to the freeze response. This adds more stress than already exists. We rarely to never let our bodies “be” in pain or move as it wishes, so we keep ourselves stuck in crisis.Keeping muscles tense drains much more energy than keeping muscles relaxed, which is one reason so many of us with dystonia experience intense pain and fatigue. This is why practicing relaxation exercises are so important because it is only when the body finds relaxation that it can reverse the damaging effects of stress.What would happen if we just allowed our symptoms to be what they were without mentally or physically trying to fight them? Easier said than done of course, but think about the possibility of just letting go and embracing the pain and involuntary movements.Since relaxation and healing are prevented when the freeze response remains active, if we get our intellectual brains out of way, perhaps we might be able to reduce our symptoms. It certainly merits consideration because the body is better able to remain balanced, vital, and adaptable to new experiences when we don’t fight what is wrong with us so much. In other words, when we are not in a mentally and physically tense state, our bodies are more susceptible to health.Stress management tips:

Deep breathing and progressive muscle relaxation. Stop what you are doing. Breathe gently, but deeply, from your abdomen. On the out breath say to yourself, “Be calm. Be peaceful.”

Allow time to pass. When we stress, everything can feel like an emergency. This is all about anxious arousal, which is temporary. Every feeling of panic comes to an end; every concern wears itself out; and every so-called emergency evaporates

When you are rushed say, “There is plenty of time. Stay calm.”

Talk to family, friends, therapist, or support group about the situations you find stressful

Life is filled with endless opportunities. Sometimes the opportunities, or silver lining, are hard to see when we have problems with our health, finances, family, or career, but they exist. When we shift our thought patterns, good fortune will always be revealed.As Napoleon Hill wrote in Think and Grow Rich, “One of the tricks of opportunity is that it has a sly habit of slipping in by the back door, and often it comes disguised in the form of misfortune, or temporary defeat. Perhaps this is why so many fail to recognize opportunity.”Instead of recognizing the opportunities that lie within our “misfortune”, we often get angry and become closed minded. Some even feel vengeful, as if the world is out to get them. It is imperative that during these times we persevere, open our minds, and really pay attention. It is then that we realize that life is happening for us, not to us.This perspective helps us remain hopeful in the present moment and about our future. It also allows for tremendous growth to take place, as it is during difficult times that we learn the most about ourselves. Challenges require us to truly look deep inside to find the life changing lessons. This is one of the gifts, or beauty if you will, of “problems.” They teach us character and how to be mentally and physically resilient.Fifteen years ago, my life dramatically changed when I developed a painful neurological movement disorder called Dystonia. It has been the greatest challenge of my life, but also my greatest teacher. When I learned to live with it and not fight it so much, new doors opened for me to learn and grow. I had to work with it to find peace and healing. This gave me a new outlook on a life I thought was taken from me by this health condition. Dystonia changed things in major ways indeed, but it opened doors to important life classrooms.

We can’t change anything until we accept it. We have to stop saying life shouldn’t be this or that way; it should be this way, because it is this way! We have to stop resisting what is, move forward, and make great things happen.With this in mind, I made a promise to myself. I said, “I do not know why this health issue happened to me and I lost everything, but I do know one thing for sure; something great is going to come from it because I refuse to go through this for nothing.” I first heard this from author and motivational speaker, Sonia Ricotti. I carry it with me every day and great things continue to happen

Be thankful for closed doors. They often guide us to the right one. Be thankful for what you have and you will end up having more. Don’t start your day with broken pieces of yesterday. Today is a new day to start fresh. Every day is another chance to change your life.

A healthy way to deal with problems is to look at them as opportunities for growth.

I have lived with dystonia for over 15 years. For more than half of those years, I had a hard time asking for help. My ego stood in the way. I was certainly helped significantly by my loved ones, but it came with guilt, until I put myself in their shoes. They wanted to help. They just didn’t always know how and I didn’t know how to ask because I struggled with the reality that I had limitations.

When my symptoms were far more severe than they are now, I had to fly across the country to a clinic. Because of the intense pain standing upright and walking, my parents wanted to get a wheelchair for me to use in the airports. Just the idea of that at the time was beyond shocking….me, a former competitive athlete in numerous sports and well seasoned traveler needing a wheelchair? Never! Boy was that silly. I really needed that wheelchair, but because of my ego I suffered much more than I had to.

Quick side note - not long ago, I was in the hospital emergency room for an unrelated issue. I accepted a wheelchair every time it was offered. I even asked for one when it wasn't offered because I needed it. If only I did that in the airport. It would have been a much easier trip!

One of the emotional barriers asking for help is feeling guilty for having a condition where we need help. It causes us to experience negative feelings about ourselves; a sense of shame and unworthiness, which leads to isolation. Sharing our feelings with others helps break this isolation and any shame we might have.

I also become negligent asking for help because I felt like a burden to others. Ironically, they often felt guilty and a burden to me because they didn’t know how to help more. This is where clear communication is vital by letting others know what we need and also to let them know that we are here for them as well.

When I finally realized that it was okay to ask for and accept help, and that I was not being a burden, my life and those around me began to change. Life became much lighter for all of us. I learned that asking for help and relying on other people when necessary does not indicate weakness or failure. It is a sign of strength. It takes courage to admit we need help, especially when we are so used to an active, fully functional life.

We are also not the only ones who live with dystonia. Our friends and family experience pain as well, as they sit by feeling helpless watching their loved ones struggle. This can put a lot of stress on friendships, marriages, and other relationships to the point that they can be dramatically altered or even end. As much as we want to be understood by others, others want to be understood by us just as much. Please be sure to give your loved ones the opportunity to share what they are experiencing.

While some relationships have ended because of the life changes associated with dystonia, many new ones began and some existing ones have become stronger. It is all a matter of how we deal with it individually and collectively. We need to listen just as much as we talk, if not more. An open door policy with any challenge in our lives is the best way for us to help one another and strengthen our relationships.

Many helping hands are there for us. We just need to reach out. To feel comfortable allowing others to help us, we have to overcome the fact that we sometimes need help. All people do in one way or another.

About Me

Tom Seaman is author of the book, Diagnosis Dystonia: Navigating the Journey, and a Certified Professional Life/Health Coach. He earned a Bachelor’s degree in Education and Psychology, after which he pursued private business ventures in health education. While pursuing his Master’s degree in Counseling he developed a painful movement disorder called dystonia. After numerous ineffective treatments and years of physical and mental trauma, Tom learned and applied a combination of techniques that greatly improved his quality of life. Tom is now dedicated to helping others with dystonia and other chronic conditions live a higher quality of life.
www.tomseamancoaching.com